Myalgic Encephalopathy [ME] or Chronic Fatigue Syndrome [CFS] causes severe debilitating fatigue and affects up to 2.6 per cent of adults in Britain. New University of Bristol research, published today [15 Sep], into the impact of the illness on employment and productivity has estimated lost earnings of over 102 million a year to the UK economy.
The study, published in the journal BMC Health Services Research and led by academics at the Universitys School of Social and Community Medicine, is one of the first to have investigated factors associated with discontinuation of employment in patients with ME or CFS or quantified its impact on productivity.

Sufferers from ME or CFS experience persistent or recurrent debilitating fatigue. In many cases, people are housebound or confined to their bed for months or years, causing their lives to change drastically and continued employment to become impossible.

Funded by the National Institute for Health Research [NIHR] and Action for M.E. charity, the study examined data from 2,170 patients attending five specialist ME/CFS services to estimate earnings lost as a consequence of ME or CFS and the overall productivity costs to the UK economy.

The productivity costs among the 2,170 patients, estimated using average annual earnings data by sex and age group obtained from the Office for National Statistics, were equivalent to 44,515 (in men) per patient and 16,130 (in women) per patient. By extrapolating these estimates to the UK population, the researchers estimated that each year 4,424 working age adults with ME or CFS might be referred for specialist assessment, and that this group would have already incurred productivity costs of 102.2 million due to their illness by the time of the assessment.

Many ME or CFS sufferers continue to work despite the primary (fatigue and pain) and secondary effects (depression and anxiety) of the condition. Loss of physical capacity is the main reason for discontinuation of employment.

Dr Esther Crawley, lead author and Consultant Senior Lecturer at the University, said: Our findings are important because they show the long-term cost to society, which must be accounted for in estimates of the cost-effectiveness of ME or CFS interventions and service provision.

In addition to this indirect cost to the UK economy, health resource use and welfare payments impose direct costs, and families of patients must bear the costs of informal care, often reducing their own working hours. In young adults, disruption of education reduces productivity in later years. Above and beyond these financial costs, ME or CFS has a huge impact on quality of life.

Sir Peter Spencer, CEO of Action for M.E., who welcomed these research findings, commented: "The key message for the Government and for the Department of Health is that the financial costs of failing to address this illness properly are much greater than the money required to set up proper NHS specialist services in all areas and to fund much needed scientific research.

"In addition to the moral imperative, there is clearly a powerful economic argument for addressing the needs of this greatly neglected patient group."

Colin Barton, Chair, Sussex and Kent ME/CFS Society, added: There is an urgent need for more adequate NHS provision for those affected by this often life-ruining illness that is costing so much."

The study entitled The impact of CFS/ME on employment and productivity in the UK: a cross-sectional study based on CFS/ME National Outcomes Database by Simon Collin, Esther Crawley, Margaret May, Jonathan Sterne and William Hollingworth is published in the journal BMC Health Services Research, funded by the National Institute for Health Research [NIHR] and co-funded by Action for M.E.

"Many ME or CFS sufferers continue to work despite the primary (fatigue and pain) and SECONDARY effects (depression and anxiety) of the condition. Loss of physical capacity is the main reason for discontinuation of employment."

In this article, we agree that ME or CFS patients suffer from SECONDARY depression. Isn't that a first in the UK?
We are getting there...

Doesn't sound good to me - Crawley and Barton seem to want to use this as an excuse for devoting more money to the 'treatments' already available, rather than recognising how ineffective they are and committing more resources to research trying to find and understand the causal mechanisms of patient's fatigue. This can be spun to show what a burden obstinate CFS patients are - refusing to be cured with CBT/GET. After having seen how the results from PACE were spun, I wouldn't be surprised by anything.

I wonder what the impact would be of a "petition" that does not really call for anything but is just a signed statement. If someone in the UK who has been treated by CBT/GET and made worse could start a petition to raise awareness, and have everyone who has been harmed sign it. It would be important that only patients who have had this therapy sign it, as you can be sure the signatures will be scrutinized.

Advocates could then use this to hammer the anti-psychobabble message home.

New University of Bristol research, published today [15 Sep], into the impact of the illness on employment and productivity has estimated lost earnings of over 102 million a year to the UK economy.

Click to expand...

I don't quite follow this:

Is this study actually to make it look like we (the sufferers) only costs the UK economy 102 Million a year and therefore less relevant - because in 2006 a study (again by Action for ME) said we cost the economy 6.4 Billion a year.

A study by the adult ME/CFS charity Action for ME indicated that the cost to the nation is approximately 6.4 billion per year.

Click to expand...

So how are we somehow costing the nation 65 times less than 5 years ago?

And as I've mentioned in a previous post - if just a fraction of 1% of the yearly loss was put into real biomedical research, it would save the nation a fortune, but more importantly to us - our health.

I was confused by the press release too, so I skimmed through the full text of the study paper (http://www.biomedcentral.com/content/pdf/1472-6963-11-217.pdf). It seems to be about lost income and productivity within a very select group of patients, not the total costs on the economy which include welfare and medical burdens and help from others. 100 million per year is a gross underestimate and the press release was misleading.

The total productivity costs among the 2,170 patients in our study were 22.3 million for men (equivalent to 44,515 per patient) and 26.9 million for women (equivalent to 16,130 per patient), giving a total loss of 49.2 million (equivalent to 22,684 per patient). The prevalence of CFS/ME referred for specialist assessment was much higher in women (17.7 per 100,000) than in men (5.3 per 100,000) in the five CFS/ME services in our study; the overall prevalence of CFS/ME referred for specialist assessment was 11.54 per 100,000. By extrapolating these estimates to the UK population, we estimated that each year 4,424 working age adults with CFS/ME might be referred for specialist assessment, and that this group would already have incurred productivity costs of 102.2 million due to their illness by the time of the assessment.

Click to expand...

So it is based on the assumption that out of the 60+ million people in the UK population, about 4424 (beware of false precision) "working age adults with CFS/ME might be referred for specialist assessment". Here comes the NSS (No Shit Sherlock) caveat.

The total productivity costs of CFS/ME are likely to be substantially higher because many adults with CFS/ME are not referred to specialist clinical teams. Our estimates for the proportion of the population who access specialist services are 20-40 times lower than the estimated prevalence of CFS/ME among adults in the USA based on community surveys.

Click to expand...

Duh. Who would have guessed?

Evidence from a recent evidence trial of cognitive behavioural therapy and graded exercise therapy indicated a recovery rate of 30-40% one year after treatment.

Click to expand...

They cite the PACE Trial here, so the propaganda and/or erroneous claims about "recovery" continue. 40% is pure fiction, the real figure was 28-30%.

Our finding suggests that people with CFS/ME continue in employment despite the primary (fatigue and pain) and secondary effects (depression and anxiety) of CFS/ME. Instead, loss of physical capacity is the ultimate arbiter of inability to continue working.

Click to expand...

While this is painfully obvious and likely due to post-exertional symptoms etc, I bet 100 million Monopoly game dollars that this will be twisted by someone to regurgitate the patronizing and discredited deconditioning hypothesis.

No matter how outrageous a lie may be, repeat it often and loud enough and it will become the 'truth'.

For a while, at least.

Click to expand...

The abuse of the results from PACE is utterly disgusting. It's so clearly dishonest, for anyone who takes the time to look at the raw data... but no-one apart from patients cares. What wretched quacks they are.

That's because you don't have to face the consequences Boule de feu of it here and now in the UK. This was not written for a new comer. It's written to try and influence UK Govenment policy.

In the UK this type of propaganda is used to finance the CBT and GET centres and their doctors.

If the Govt is urged to do something as a result of this article it hurts us. Why, because any money generated goes to the Psych lobby for either more shoddy research or more shoddy "treatment centres".

The money spent on this report could have financed research into cause or cure - so it's money down the drain.

That's because you don't have to face the consequences Boule de feu of it here and now in the UK.

In the UK this type of propaganda is used to finance the CBT and GET centres and their doctors.

If the Govt is urged to do something as a result of this article it hurts us. Why, because any money generated goes to the Psych lobby for either more shoddy research or more shoddy "treatment centres".

The money spent on this report could have financed research into cause or cure - so it's money down the drain.

This is publicity we can do without.

Click to expand...

You are probably right and I understand perfectly what you are saying. However, I still believe (besides the hidden agenda-s) that this article is not all bad. After reading this, some will look it up on the internet and learn (for the first time!) that ME exists.

By the way, we also get CBT and GET here, in Canada, but for some reasons it is not perceived as a bad thing (at least, I don't think so).
I got a lot from the CBT (25 sessions). It was given by a health psychologist and not a psychiatrist. - I kept in mind what was useful for me in order to function every day. but it did not cure my illness nor was I able to do the GET program. Too sick for that. During our last session, she said: "I hope they will find a cure for ME. I wish you all the best".
However, it's true that nobody forces us to go this route and we do receive medical care as well.

For the last six years, I have been seeing my GP every three months. Sometimes, he sees me each month when I'm too sick. He never said once: "I think it's time to refer you to a psychiatrist."

When I read articles like these, I can't thank God enough that I am living here.
Everything is free. ME is perceived as a genuine physiological illness. I did not have to fight very hard to get my insurance (and the governement) to pay. It does make a big difference.

You are probably right and I understand perfectly what you are saying. However, I still believe (besides the hidden agenda-s) that this article is not all bad. After reading this, some will look it up on the internet and learn (for the first time!) that ME exists.

By the way, we also get CBT and GET here, in Canada, but for some reasons it is not perceived as a bad thing (at least, I don't think so).
I got a lot from the CBT (25 sessions). It was given by a health psychologist and not a psychiatrist. - I kept in mind what was useful for me in order to function every day. but it did not cure my illness nor was I able to do the GET program. Too sick for that. During our last session, she said: "I hope they will find a cure for ME. I wish you all the best".
However, it's true that nobody forces us to go this route and we do receive medical care as well./QUOTE]

Hi Boule de feu, there are major differences between CBT as practiced in most of the world, even the UK, and as practiced in the UK to treat CFS. Both are talk therapy, both want to adjust how you think about things, but the UK CBT CFS treatment is NOT aimed at helping people cope ... its aimed at convincing you to exercise beyond your capacity.

I too have had traditional CBT and found it useful for stress management. That is something else entirely.

The psychobabblers do this all the time. Their CBT is not the CBT that most recognize. Look at the pace trial ... they use a definition of CFS that is not the recognized international standard. Their definition of ME was a highly modified form of a less known definition. Their form of pacing is anti-pacing, a complete violation of pacing principles. Their definition of returning to normal would have a twenty year old with the functional capacity of an eighty year old as normal. They make use of different definitions in their studies and rely on the public, media and the majority of doctors to not look further. It is blatant dishonest spin. They use whatever version of the definition that suits their current argument, and if they are challenged they revert to the definition that protects their interests. Sometimes their claims are supportable by the evidence, but mostly they are not - and yet it always sounds so reasonable. A claim that over 30% were returned to normal was forced to be retracted. I wonder why?

I like CBT as properly practiced. I also think most of us could use psychological support to help us cope. This is not what is being offered to PWMEs in the UK.

The most dangerous thing is the furthering of the notion that all we need is therapy and exercise. I don't doubt that some with idiopathic chronic fatigue benefit from this, as do some with depression, but they sell it as though all those with chronic fatigue are the same.

My best guess is that the cost to the UK from ME is over five billion pounds per annum, perhaps more.